Tuesday, December 29, 2009
In regards to Madison's new heart, her appointment on Monday (December 28) went perfectly. Her heart is beautiful and beats without any error. I am laughing as I write this because her personality has changed so much since transplant. She is still a happy baby; no longer the constant fussiness that we had grown accustomed to. BUT she is beginning to act more and more like a typical 1.5 year old. I love it, but she was a little stinker at her appointment. She screamed through her entire echo, which was only about 15 minutes. I had her purse full of toys and her favorite food, but nothing was working. She even spit out her meds right in front of our transplant coordinator (Emily). She refused to wear her mask, even though I told her how pretty she looked. And then she had a little temper tantrum while trying to get dressed. In case you are wondering... she's feeling just fine! (and I love it..)
As this month is coming to an end, I'm beginning to be an emotional mess. I can't believe what all we've done this month. I should make a checklist just to have fun checking things off. Who would've thought?? I'm also in awe at the number of blessings and miracles we have witnessed. We are so lucky to have great friends and family and to have received the overwhelming support that we did. Again, thank you to everyone.
Speaking of blessings.. on December 24, our family received another blessing. We got a knock on our door at 11:30pm Christmas Eve. I thought I was fast in opening the door, but when I opened the door.. nobody was there. Instead, sitting on our doorstep was an entire ham, the book Christmas Jars (has anybody read it?), and a jar full of money. To whomever you are.. thank you. Mark and I spent the rest of the night in awe. We couldn't talk because our hearts were so full; instead we would look at each other and begin to cry.
We have learned more about people and the pure love of Christ, in the last 25 days than we have ever known. For that, I am thankful and humbled. I will never forget it. It has changed me. It has changed our family..
Of course, without disclosing any confidential information, Michelle (our other transplant coordinator) informed me that there will be some FUN families at our Wednesday appointment. And that I knew them. hmm.. We'll keep a look-out for whomever you are. See you tomorrow morning!
(pictures are coming..)
Wednesday, December 23, 2009
Update on Madison: Maddie is continuing to do amazingly well. Today we had our 3rd cardiology appointment since coming home. Madison has cardiology appointments twice a week (Monday and Thursday) At each appointment, Madison has blood work, an echo, EKG, meet with one of the Transplant Coordinators (Michelle or Emily), and then our appointment with Dr. Everitt. Each appointment has looked better and better. I still love watching her echos. There is such a dramatic difference between her old and new heart. Her new heart is absolutely perfect and beautiful.
Yesterday, I had the opportunity of finishing the letter to our donor family. Mark and I think about our donor family all day, every day. We are overcome by their love and willingness to donate. We love them. As this Christmas time is going to be difficult for them, Mark and I felt that it was important to have them receive our letter before Christmas. By the power of 'e-mail', our donor family should receive their letter tomorrow. Writing the letter was one of the toughest and humbling things I have ever done. I'm grateful for the opportunity I had to write this letter. It's another moment I wish others could experience; the deep feeling of gratitude, saddness, pure happiness, and peace of mind. It took 1/2 box of tissues and a husband checking in to offer some counsel. I hope that I will hear back from this family; the family that allowed us to witness a miracle. Through this Christmas season, will you please keep our donor family in your prayers? I can't imagine enduring what they have been through, especially during the holidays. I am so sorry for them.
I would like to share a line from my letter to our donor family:
"In the same country, with only a couple states seperating us, one family endured a tragedy while another embraced a miracle. From deep within my soul, I thank you for allowing your baby to donate."
Saturday, December 19, 2009
Since we have been home, we have had a few of adjustments. I wish you could be a fly on the wall in our house, especially with the meds. It can be pretty hilarious. Madison came home on 13 meds. You should have seen the look on people's faces when we picked up our order from the pharmacy. (I should have taken a picture of everyone starring at us..) I wanted to share some of the instructions we have to follow when giving Maddie her meds.. (I hope you find this kind of humorous..)
1. Take with Food.
2. Take on empty stomach.
3. Do not take with milk products.
5. Keep out of light.
6. Avoid contact with other people.
7. Do not refrigerate.
8. Drink plenty of water.
9. Do not eat grapefruit while taking this drug.
10. Chew tablet before swallowing.
11. Swish in mouth for as long as possible before swallowing.
12. Avoid prolonged exposure to sun.
13. Take Monday, Wednesday, Friday only.
14. Take 4x daily.
15. Take 3x daily.
16. Take 2x daily.
17. Take once a day.
I'm happy to report that Madison is doing very well at taking her meds. I found my solution; it was simple. Flavor the meds. Duh! The hospital doesn't flavor meds when you are an inpatient. (Can you only imagine what that order to the pharmacy would entail?) I had questioned her nurse a couple times about flavoring, but never seemed to find a solution. Her meds were absolutely, crawl out of your skin, awful ... but much, much better now.
In regards to everything else, Madison continues to soar. She looks so good.. she glows! I didn't realize how sick she actually looked before. Her decrease in heart funtion was so gradual, which made it difficult to see her little body getting sicker. A once fussy baby is now the happiest person in our home. She is crawling around the house, pulling herself up on things, and simply enjoying life as a toddler. Madison is also eating extremely well. She now eats double what her brother eats. It is cute to see her excited for food rather than me begging her to eat. Dr. Everitt reminded me that some of Maddie's meds could make her really hungry and thirsty ... or she could just feel better. I'm going with the 2nd guess. I love that she feels good and is healthy. I love that she is happier. I love that she has more energy and is interactive. I love that she is more of who she is. I love that I have my baby girl back.
Again, thank you for your prayers, thoughts, and support. We love you.
(I have a couple more hospital entries that I want to post.. stay tuned.)
Tuesday, December 15, 2009
While there is much I want to write about ... I'm exhausted and will save them for another entry. :)
Madison has continued to do remarkably well through everything. Her last chest tube should be coming out tomorrow morning. Her medical team would like to observe her for at least 24 hours and then we will be going home. Wow... yes, another miracle will happen tomorrow.
Here is our busy schedule for tomorrow: (just incase anyone is curious what we do all day :) )
7:00am: Order breakfast
8:00am... Meds begin (Madison takes 10 medications at this time. It will take us 2 hours to eat breakfast and take meds .. and not throw up. While we have had many close calls, Maddie hasn't thrown up her meds in 3 days!!)
8:30am: Doctor's rounds.
10:00am: More Meds arrive (Madison has 3 more medications to take..)
10:00 am: Echo
** Sometime in the morning... chest tube comes out.
12:00pm: More meds arrive
Nap tme? (at least for me.. please?)
Time for bed..
**Seriously, if anyone has any suggestions for taking / giving meds - I'll take them. Maddie is doing really well... right now. But, I'm not sure how long it will last.
Thank you and goodnight.
(Shauntelle... I need to call you. I keep forgetting and now we are going home. I would really like to get together. I will call you tomorrow. Will you please call me, if I forget? (801) 649-9551. Thank you.)
Sunday, December 13, 2009
On Thursday December 3 Michelle, Cooper and I took a quick break from the hospital to get pictures in front of Madison's tree at that festival of trees. We wanted to walk through the festival but only had time to get a few pictures and then had to head back to the hospital before the nurses shift change ended. After snapping this family picture Cooper got off my lap and snuck under the chains that were protecting the trees. He did not care about all the shinny ornaments or the bears under the tree but instead picked up the picture of his sister and took it back to show his Mom. He was so proud as he held her picture. Little moments like this show how much he loves his sister.
Cooper and Madison have not spent a day apart since they came home from the hospital so this has turned his world upside down. Cooper has done really well with this so far and thanks to some help from his grandma and aunt he has been well taken care of. Michelle and I look forward to all being home together this week if all goes well.
It is crazy to think that these pictures were taken only 45 minutes before we found out Madison's new heart was coming. The call came as we were driving back to the hospital from the Festival of Trees.
I won't leave you hanging so here is a quick update on Madison. I'll let Michelle give you all the details because she is better at it then me. Madison is continuing to do great. This morning her labs came back and her white blood count is back down. We hate to see the PICC line go but I guess it better that then an infection. Madison continues to eat better and better everyday. We are still on track to be home this week. I can't wait to get back home but am sure we will have many challenges along the way.
It is getting late so I am off to get some sleep before our early morning of x-rays, blood work and echo.
Madison has continued to recover beautifully and is doing well. I am completely amazed at our miraculous journey thus far. Everyday, I witness miracle after miracle after miracle with our little girl. And everyday, I find myself so humbled and thankful for the way things have turned out.
She is my tough little girl. I find myself falling in love with her more and more each day. I always tell her that I'm so sorry for all that she has to go through. Her poor little legs and arms are black and blue from being poked. She is officially scared of anyone who walks in her room. From the beginning of our doctor's appointments, I chose to always be honest with Madison. I tell her either 'owie or no owies.' She completely understands and I feel as though it better prepares her for when the owies do occur.
It has been 8 days since her transplant. I am completely amazed at her fast recovery. Here is a little update:
1. Madison has only one chest tube left. (1 of 4) It is still draining quite a bit, so they plan on leaving it in for the next couple days.
2. She is doing much better in taking her meds. Some of her meds taste absolutely awful! Together with her nurses, we have been getting creative in trying to make this somewhat of a positive experience. There are times when her meds go smoothly and other times when they make her throw up. Today was a throw up day. At one point, I was covered from shoulders to ankles... nothing on her, just mom.
3. Madison WBC (white blood count) doubled yesterday and again today, indicating an infection. The infection was found in her PICC Line. She is now on antibiotics (this makes 17 total meds..). The PICC Line has been removed and the sad times begin. Because Maddie doesn't have a PICC Line, she had to get another IV, and she will have to be poked every morning for labs. (they take a lot of blood, too) She is such a hard poke and bruises so easily. Dang it! The IV team has been great in working with her. I always ask for the IV team! It's simply not worth anyone else trying.
4. Food: Due to heart failure, Madison hasn't ever been a great eater. (unless it has 0 calories... cucumbers, green beans, and pickles are her favorite) Now, her meds are causing her to not eat so well. I'm hoping that once we get home, things will change.
Madison's new heart continues to be perfect in every way. It is absolutely perfect for her. I love starring at it on the monitor as it is so comforting. She has been given a perfect organ. Thank you to our donor family. We love you.
(we might be going home on Thursday. I'm so excited!)
Thursday, December 10, 2009
Madison is taking all of her meds by mouth. (Holy Cow... LOTS OF MEDS..) She now takes 15 medications. Last night and tonight, she threw up after her last one. I plan on talking to the pharmacist tomorrow in regards to the side affects (I just want another print out. I know there are 100's of side affects..) and any suggestions. Meds just might be our biggest challenge when we get home.
I'm exhausted. Maddie and I are off to bed. Good night.
Tuesday, December 8, 2009
The first thing that Dr. AK said was, "I opened up her chest and just starred." "I couldn't believe what her heart was doing." "It wasn't even beating!" Her little heart was simply rocking from back and forth. The blood inside of her heart was sloshing around. He couldn't believe she didn't have any other cardiac issues. The human body is amazing as it automatically molds and adapts to try and correct what isn't working. Dr. AK explained that when an major organ, such as a heart, is in distress, other organs will compensate in order to save it. That is exactly what her little body was doing.
Her old heart was 4x the size it should have been; the same size of a 14 year old's heart. It was about the same size as my fist. (your heart is about the size as your own fist..) There wasn't any room in her tiny body for such a large organ. Her left lung was completely collapsed as her heart was squishing it and all of her organs had been pushed to the side. Because her heart wasn't beating correctly, within a couple days Maddie became lethargic, throwing up, no appetite, pale and sort of a dusk color.
Madison's new heart is the size of a walnut. Dr. AK said that it was the perfect size for such a sweet girl. In looking at the pictures below; looking down at her heart, it should be about the same size as his watch.
(I didn't realize these pictures are hard to see. We are meeting with the pathologist in a couple days. I plan on taking more detailed pics at that time..)
The white lining on the inside of her heart is the diseased part (her Hypertrophic Cardiomyopathy) Also, the lining of her heart was rough. It should have been smooth and clean.
In regards to the extra space in her chest and the fluid...it's still there. I don't think it's getting worse, but it doesn't seem to be going away either. Madison's cardiologist (Dr. Everitt) and Dr. AK would simply feel better with it drained out. With that decision, we are next in line for the Operating Room. The plan is to put another chest tube in, which will drain the fluid. And then we should be good to go.
Although Maddie is off to the OR again, she did have quite the productive morning..
1. Atrial lines out. (that means I got to hold her. yeah!)
2. External pacemaker turned off. (her heart is beating perfectly on it's own)
3. 1 of 3 (soon to be 4) chest tubes removed.
4. Daily chest x-ray.
5. Daily labs.
My heart is full of gratitude for everyone's concern for our little girl. Thank you. We love you.
(Andrea.. thanks for your e-mails. It's so fun to get mail delivered to her room. Mark and I love it!)
Monday, December 7, 2009
For anyone who has had any type of surgery before, does gas bubbles make you instantly hurt again? They are horrible! I have had them before and they hurt so bad! Now my heart aches for her little belly. Surgeries just aren't any fun! Maddie's gas bubbles began as a result of her major pain medications wearing off and her organs waking up and working again. (this is normal, just not fun to go through..) She didn't sleep much last night as she tossed and turned and screamed as bubbles developed and passed through. So, what does a mom do for her baby during all of this? Not much.. I can't even hold her yet because her chest tubes and her atrial lines are still in. I just hold her little hands and head and tell her, I'm so sorry.
Other symptoms we are dealing with (from her old heart): It has been explained to Mark and I many, many times from many different docs that her little body was starving on the inside. (Starving meaning lack of oxgyen and lack of nutrients due to her heart not pumping well..) Her organs were protecting the most important organ (her heart) by restricting blood flow to the less important organs and extremities. Yet, while her little body was going through all of this on the inside, she showed very few symptoms on the outside. Heart Failure is extremely deceiving!
Anyway.. because her organs were in such distress, now we are dealing with them reacting and responding because they are actually getting the proper amount of blood flow. It's kind of like wearing a rubber band around your arm for a long time cuting off circulation; releasing that rubber band is a good thing, but everything hurts and reacts to finally being able to work properly. This mess is most likely causing some of her stomach pains as well. (Darn it!) So... to help her organs get a large amount of blood volume (oxygen and nutrients) fast, they have hooked her new heart to an external pacemaker. This will allow them to increase her heart rate, so it will pump that extra - needed volume to her organs.
Issue #?: Another issue that everyone around here is stirring about .. Maddie's old heart was 4x the size it should have been. (stay tuned for the post about her old heart.. I even have pictures..) Because her old heart was so big and her new heart is so small (normal size), there is a large empty space around her new heart. We want her body to recognize empty space; her organs and lungs need to spread out and enjoy life without have to be so squished. We are waiting patiently for that to happen. Meanwhile fluid is building up in that extra space. (Dang it!) This is not good. The heart doesn't pump well in water. If fluid continues to build up, Dr. AK will need to put a tube in to drain the fluid. This procedure is done in the OR. I don't want to worry anyone. There isn't a lot of fluid right now.. just something they are going to watch very closely.
Good news: Maddie does need a Picc Line, but she doesn't have heart issues anymore. This means she can be fully sedated and I'm a happy mom. (yeah for a good, healthy heart)
I'll update again later this afteroon. I'll also post about her old heart (with pictures..)
Again, thank you for your love, prayers, and support.
Sunday, December 6, 2009
Contrary from the moaning, whimpering, and being uncomfortable of yesterday, Madison has been sleeping peacefully all day. She continues to be performing quite the speedy recovery. She has surprised almost every doctor and nurse around. In fact, Maddie decided to sleep on her stomach last night. That's right. She rolled over, tucked her legs under, bum in the air and slept most of the night just like that. Yes, she still has chest tubes in and multiple IV lines. She didn't pull anything out (thank goodness). Her nurse felt that if she was comfortable and nothing was kinked.. then it was ok.
Maddie is eating real food by mouth. She has had yogart, eggs, potatoes, popsicle, juice, and formula. She is eating so good. We are so happy.
Madison's IV medications continue to disappear as she is beginning to take them orally.
Maddie does make it known to everyone that she doesn't like her diaper changed. I think it hurts her poor little chest when you lift her legs up. She cries and soon we are crying together as I change her little bum. I haven't made it through one diaper change without crying. I've just been informed that Madison will also need another Picc Line. Are they for real? I am so sad.. can I hold her through another one? That will happen tomorow.
So.. tomorrow's agenda includes:
1. Picc Line.
3. Taking out the Right Atrial Line. (that is kind of like an IV that is directly in her heart. It allows her medication to go directly in her heart and it measures the pressures on the right side of heart.)
4. Daily blood work.
5. Daily chest x-ray.
Her chest tubes still need to stay in as they are still draining quite a bit of fluid. This is ok that they are draining so much fluid.. she has a lot of extra space around her new heart (because her old heart was so big). That extra space can collect fluid easily, until her organs and lungs fill in that space.
Thanks again for your concern and continued support. Please continue to pray for Maddie as tomorrow will be a busy day for her. Take Care.
Saturday, December 5, 2009
Anyway, I have just been informed that because Madison is eating so well, they are going to begin to switch her IV medications to taking them orally. This transition will begin tomorrow and they will take it slowly. (definitely not all at once..)
Question to all Heart Mom's..
1. What is this going to be like to give Maddie +12 medications a day? Shauntelle, I took notes on what you suggested to me yesterday. Great ideas!!
2. How do you make this somewhat of a positive experience?
3. Are there medications that they like (taste ok) and some that they hate?
4. Any tricks for having them take the meds that taste yucky, or make them feel yucky?
5. I know these meds have horrible side affects. Any suggestions in dealing with those?
I can give Maddie her meds. She usually takes them without any problems. She was on 4 medications prior to transplant. I'm just a little nervous to give her 8 yucky tasting meds. It's definitely a different ball game now.
Thanks for your help. I'll holler as I have more questions.
As I write this entry, I'm sitting right next to her bed. I can't get any closer to her, as I'm not able to hold her for about the next 3 days, or until her chest tubes come out. She continues to receive Morphine every two hours, but Miss Maddie is begging for more. She has been constantly moaning and whimperimg all day. Her nurse (who has done such a wonderful job) has assured me, many times, that her pain is being managed; Madison is simply old enough to realize that this isn't fun. I just wish she would go to sleep. I have tried everything; holding her hand, holding her body, talking and singing (no laughing at the singing part), ignoring with hopes that she would fall asleep. (I'm not good at the ignoring part, so I didn't try it often)
Timeout: I think we just figured it out.. Maddie can finally start eating. We just tried apple juice, which she grabbed out of my hand and gulped down. I'm sure she has been thirsty this entire time, especially due to her respirator. That can definitely cause a sore, scratchy throat. We tried 2 oz. of apple juice. We waited a little while to make sure it stayed down. I then offered Maddie a bottle of formula and she happily drank 6 oz. She is now sleeping and I'm a very happy mom.
Today has been a day of 'fine-tuning' and trying to meet Madison's specific needs. We've had a few bumps in the road, but that's to be expected. Madison is currently on 12 medications. As you can see from the picture below, I'm making sure that I get my fix as well.
In regards to her respirator, it came out today around 12:00pm. (yeah!) Plan A is ICU for about 4 days, then to the floor, and maybe home before Christmas. This plan is if everything goes perfect. We may have some setbacks and I should probably prepare myself for that. It really doesn't matter how long we are here... we have a healthy baby girl who now has a perfect heart. It can't get any better than that.
While sitting next to Maddie's bedside, I've had some time to reminisce over yesterday. I look back to the pictures of Maddie just before her surgery and I instantly start to cry. I can still feel those exact feelings of being so scared for her. The thought of a transplant surgery terrified me. It still does and the surgery is over. Yet while she was in surgery I found myself calm and under control. My personal prayers were definitely being answered. I felt comfortable with our surgeon and his abilities. I simply knew she would be ok.
There are also many people who supported us and I personally thank them.
Our Donor Family: How does a mom begin to thank you for giving such a sacred gift to her little girl? Thank you. I love you and I'm so sorry. I've been thinking about this family for a couple months (since Maddie was first listed). I have much admiration for them and admire their strength and courage in allowing their baby to be a donor. What a wonderful gift during this Christmas season; The Gift of Life. Because of their decision, our baby girl was given another chance in life. Thank you. God be with you till we meet. I hope we will meet soon.
Dr. AK: You preformed another miracle. Thank you for recognizing your gift in life and becoming perfect at it. Your abilities amaze me. Thank you for taking such good care of my little girl. I felt so comfortable while she was in surgery knowing that you were operating on her.
Dr. Everitt: Thank you for recognizing a nagging feeling and acting upon it. Because of your nagging feeling, we have our little girl. It was so good to see you after surgery and the enormous smile on your face. You are an amazing doctor and we love having you as our doctor.
Diamond Rental: You have shown an enormous amount of support since the beginning. Thank you for going above and beyond for our family. Madison's tree at The Festival of Trees is beautiful. Mark and I love you and appreciate you.
Our dear friends Larry and Trina: Oh my gosh! Thank you for purchasing Maddie's tree and giving it to us. It is an amazing gift and means so much to Mark and I. The tree symbolizes love, exactly what the heart symbolizes. And was purchased on the day that Maddie received news of her new heart. I love that we will always have this tree. Thank you. Mark and I love you.
Friends and Family: Thank you for coming last night. Thank you for your love and support. Thank you for caring so much for our little family. It meant so much to our little family.
Friday, December 4, 2009
We need to thank all those who are following our story and have given us support and prayers. We have truly seen a miracle tonight.
Posted by Madison's Dad
I'll keep everyone posted. Thank you for your prayers and for the love you've shown our family. We feel so blessed to have such great support.
(I should have updated this blog earlier, but instead I just wanted to hold Maddie all night. I couldn't let go of her).
Through the night, Mark and I have been flooded with every emotion. I don't think there are any words to perfectly describe how we are feeling. We are so grateful, excited, humbled, sad, happy, and very very scared (at least I am..). We know that we are in the best hospital and we have an amazing team with us. Abigail's dad was right...while I wouldn't wish this to happen to any family, I do wish that you could experise some of our experiences. We have had some humbling and amazing experiences. I wish all of you could meet our cardiology team. They are brilliant people who are truely living and doing exactly what they have come to earth to do. I'm beginning to believe that one can be foreordained to be a surgeon or anesthesiologist . Maybe.. who knows. They are brilliant. They have become our family.
Anyway... Maddie should be going into surgery around 3:00pm (ish) today. She will be in surgery for about 6-8 hours. You are welcome to come to the hospital and visit with Mark and I. (we could probably use a little chattin) For serious, please come by! Mark and I would love it. And we need you. We are only asking that family and friends come around 4:00pm ish. Mark and I just want to spend this morning with Madison. (plus we are talking with many doctors and want to be 100% available to them.)
I promise to keep Maddie's blog updated. For now, here are some pictures of us during the last 12 hours. Enjoy.
Tuesday, December 1, 2009
I've been trying to write this entry for a while now. I tell ya.. just being in the hospital is a full time job for moms (and dads). The doctors and nurses have kept me pretty busy. To be honest, I prefer that. Those who know me, know that I like to be incharge (no laughing..) It's nice to feel like I'm running the show over here.
(Maddie is sleeping right now, so I'm going to type fast)
Here's a little update as to why and how we ended up here. (and now that we're here, how we get out of here..) It really started with her routine cardiologist appointment on November 12. Just as any other visit, Maddie had an echo. Dr. Everitt informed us that her echo had worsened and her Tricuspid Valve was leaking more than her previous echo had shown. Dr. Everitt then continued her exam, took a deep breath, and said to come back in two weeks. At this point, there really isn't anything more they can do for Madison, unless she is admitted. This visit, she is was definitely sitting on the borderline of whether or not to admit her.
Although Madison continues to look so good (on the outside), I knew that what was happening inside her little body was going to catch up to her soon. Her heart is working so hard. Her echos are scary to watch. You don't have to be a cardiologist to see that her heart is heading for trouble. Madison still had not gained any weight (she has been 17lbs. since June.)
On Friday Madison randomly threw up. Naturally, one would think she was starting to get sick. But she wasn't showing any other sick symptoms. Mark and I both had a feeling that this wasn't a sick symptom, it was the next stage of heart failure symptoms. We've had this feeling since November 12. In a way, we knew it was coming. On Saturday, Madison threw up again; on two seperate occasions. At this point, Madison still is not showing any signs of being sick (cold or flu). By Sunday, Madison was beginning to look pale. Her activity level was still normal and following the throwing up moments, she was fine. There wasn't any reason to rush her to the ER or InstaCare. I knew she was ok, but something was definitely going on.
Monday morning we had a routine cardiologist appointment. (if she didn't have one scheduled, I would have called) We went and had labs first. Her *BNP level is still +4,000. Upon exam by Dr. Everitt, she noticed that Madison's liver was enlarged. This is a clear sign that her heart isn't pumping enough oxygen or nutrients to her organs. She immediately sent us for an unplanned / unscheduled echo. Her heart has worsened significatly AGAIN. Following the echo, we were escorted directly up to the PICU where a bed and team of doctors were waiting for us.
And here we are.. in our little suite. They have started Madison on Milrinone. Milrinone is a heart medication that can only be administered through IV. Doctors have described this drug as being an energy drink for her heart. This drug allows Madison's heart to relax, but pump stronger or smoother, and more efficiently. This will allow her heart some 'breathing time', so it can get stronger. That's where the energy drink comes in... her heart is getting a little boost.
Today's events included waiting and then finally getting a Picc Line. For those of you not familiar... 'waiting' is a typical hospital game played between patients, parents, and medical staff. I have become very good at waiting patiently. :)
Anyway... Madison was first scheduled to receive her Picc Line yesterday. The IV Team was busy and requested that she get one first thing in the morning. 8:00am was the plan until that was pushed back to 12:00pm and that was pushed to 1:30pm. I felt so bad for her; she had gone 12 hours without food or drink. She was receiving fluids through her IV, but she was very restless this morning.
Speaking of food and drink... Madison has tried to eat, but still isn't keeping much food down. She is throwing up 1-2 times per day.
Good news... Madison will be coming home with a Picc Line. This will hopefully minimize or eliminate hospital visits. The magical heart drug, Milrinone can be administered through her Picc Line. I'm not sure if this will be a permanent med, or given as needed per Dr. Everitt's instruction.
Upon discharge, Miss Madison is also coming home with an NG-Tube. This is a feeding tube inserted through her nose. She also has a new med... Lovenox. (Every heart mom's worst nightmare) Lovenox is a blood thinner and can only be administered through a shot in her thigh or bum. Is now a good time to remind the world that I have a degree in Social Work, not Nursing?!
K - Heart mom's (or whomever)... I could use some advice. Are there any Home Health Companies that anyone especially likes working with? Anything else I should know about?
Thursday, November 26, 2009
Another humbling experience is the amount of support we are receiving. It is unbelievable! There are so many good, good people out there. From the moment we found out that Madison would need a transplant, so many have wanted to help. Thank you. Because of your help, we are in the process of setting up a Trust Fund for Madison. This fund will be used specifically for her medical expenses.
A special thanks to Diamond Rental and the employees of Diamond Rental. Each employee has gone above and beyond for our little girl. Again, thank you. It's people like you and a business that truely cares.. that make situations such as ours, a little easier.
we can do this...
Wednesday, November 18, 2009
I still find myself stunned and in shock that our family is going through this. For real? I couldn't believe that I was about to meet with the Heart Transplant team at Primary Children' s Hospital. Was I really there for my own daughter?
Mark and I prepared ourselves both spiritually and mentally. We knew we needed to be strong and make it through this appointment. This was 'The Talk' and we were first reminded by Dr. Everitt that a discussion or appointment such as this one only occurs when there are no other options available. We had no idea just how educated on Heart Transplants we would become. We had our list of questions with us, but we didn't have to ask any of them. They were all addressed and in a lot more detail than I imagined.
Our appointment began at about 11:00am and continued for the entire day. Yes, the entire day. Mark and I walked out of the clinic room at 6:00pm. The clinic was closed. We had just spent all day in the Cardiology Clinic. Our appointments consisted of first meeting with the Financial / Insurance Rep., Social Worker, Pharmacist, Surgeon, Transplant Coordinators, and finally Dr. Everitt. Each person spent 45 min. to 2 hours with us. We were completely exhausted by the end. Here is what they all had to say.
The Transplant Coordinators (Michelle and Emily) attended our appointment off and on all afternoon. During one of their 'pop-ins', they explained to us the protocol for being on the transplant list, and / or receiving a heart when one becomes available. First, Madison cannot be sick. (no pressure on me..I now demand hand washing.) Aside from the fact that Madison's heart condition could worsen if she gets sick; they simply will not do the procedure if she is sick at all. She can't even have a cold - nothing. It's too risky and they won't do it. Second, we must always be within 2 hours of the hospital. Following Madison's transplant we will need to stay just as close to the hospital for about a year. Needless to say, we're not leaving Utah anytime soon.
Financial / Insurance Rep: Are you ready for this? Our health insurance is one of the many who don't cover transplant surgeries in Utah. Their reason is political and only has to do with dollars. A transplant is one of the most expensive medical procedures. Because of this, our insurance company has hand-picked certain hospitals within the US that are approved and contracted with them. Denver is the closest contracted hospital for us. (remind me to send our insurance company a Christmas card..) I have contacted our insurance company and they informed me the choice of hospital was based on fatality rate and cost per surgery. Denver can do it cheaper than Primary Children's. K-remember the rules above.. we have to live within 2 hours of the hospital and have to remain just as close for up to a year following Madison's surgery. It became obvious very fast that our family would have to re-locate to Denver. OR Madison and I would move to Denver for, who knows how long, and our famiy would be seperated.
Knowing this was Plan A, I tearfully asked if there was a Plan B available. I was so scared that this was our only option. I couldn't imagine how we were going to coordinate this. Were we really being asked to seperate our family? The Financial / Insurance person explained that Plan B would be applying for Medicaid for Madison. We applied. Madison's heart diagnosis qualified as a disability and Medicaid now serves as her secondary insurance. Medicaid has only approved coverage until her surgery. Once Madison receives her new heart, she won't have her disabilty anymore and Medicaid won't cover her. This is 100% ok with me. I am relieved and thankful that our family is able to stay together. Now we are definitely not leaving Utah for any reason!
Pharmacist: Following Madison's transplant, she could be taking 7-12 different medications. Half of these medications consist of steriods, blood thinners, rejection medication, and antibiotics. The other half of the medications are given to treat the side affects from the first half.
Surgeon: After an exhausting day, we had the opportunity to meet Dr. AK. I would meet with him again and again and again. He is brilliant and confident in the surgery he performs. He made Mark and I feel so much better. The feeling I felt while meeting with him, confirmed that Madison will be ok. She's in good hands. Dr. AK described in great detail the process of what happens from one life to another. He explained that in most cases, once the new heart touches warmth, it begins to beat on it's own, without any assistance from modern medicine. Dr. AK said, "God created the heart to beat and it simply knows what to do." As I have read other blogs, he was right. Many hearts simply start beating on their own. It is absolutely amazing. Dr. AK said it's a miracle and he has been given the privilege to witness it numerous times over. As he contined to explain this process of what happens between one life to another, I remember thinking how in-tune all medical staff must be when a transplant takes place. I thank him for his time that day and I'm thankful for the opportunity I had to meet him.
we can do this...
Sunday, November 15, 2009
To back up a little bit, Madison had just seen Dr. Everitt the day before (October 7). It was a routine appointment with the typical tests administered (Echo, EKG, blood work). Overall, our appointment went well. There was one small red flag... Madison still wasn't gaining weight. This did worry Dr. Everitt, but we both concluded that things were going well. Madison wasn't showing any other major 'heart failure symptoms'. Dr. Everitt said she didn't need to see Madison until December. I was thrilled... December! Really? This was going to be the longest time between appointments we had ever gone.
The next morning I received 'the phone call' from Dr. Everitt. She explained to me that Madison's 'heart failure symptom' of not gaining weight was nagging at her. She had a feeling that something more might be going on with Madison's heart. So, upon coming to work, Dr. Everitt took some time to study Madison's echos. Instead of comparing each echo from month to month, she decided to only look at her current echo (the one she had on October 7) and compare it to an echo in March. She then explained to me that when looking at the echos with an 8 month gap between them, it was obvious there had been a dramatic decrease in her heart function. Her heart is working too hard and her valves have started to leak. As I cried, Dr. Everitt kept saying, "I'm so sorry to have to tell this to you over the phone." She then informed me that it was time to list Madison for a heart transplant.
Dr. Everitt and I continued talking for about 20 minutes. Actually, I think I just cried and she talked. I remember asking Dr. Everitt if she had the right patient. I know that sounds silly to ask, but Madison looks so good. I understand that she has a heart problem, but is it bad enough for a transplant? The answer is yes. Dr. Everitt reviewed the 'heart failure symptoms' that Madison is currently showing..
1. Slow (very slow) weight gain.
2. Overall development is slower than an infant/toddler her age.
3. Madison experiences moments of sweating. (I think these are moments when her little heart is working too hard, or is tired..)
4. Overall size of her heart is too big and is putting pressure on her lungs. (X-rays will be taken often to ensure there isn't any fluid build up in the lungs or around her heart.)
Dr. Everitt explained to me that her symptoms could get worse and there are other symptoms we should watch for. Her condition will definitely worsen if she gets sick. We then made an appointment to meet with the Heart Transplant team for October 15 at 10:30am.
Following my phone call with Dr. Everitt, my emotions became stronger as I now needed to call Mark to inform him of the news. Mark ended up coming home early from work. We sat on living room floor and played with our kiddos. Emotions ran high as we both found ourselves crying off and on that day. We had just received the worst news ever and have no idea what's ahead. We are so scared, but will do whatever we need to for our little girl. The cute part of the story was that Madison was so happy; she had no idea what had just happened.
October 8 was also our 10-year wedding anniversary. Happy Anniversary, Mark. I love you. (we can do this..)
We live in Provo; Cooper and Madison were born at the University of Utah Hospital. How lucky was I to have delivered my babies at a hospital where all the speciality doctors were located. Litte did I know, I would need them!
Cooper and Madison were born 9 weeks early. This resulted in us living in the NICU for 7 weeks. Living? Yes, we lived there as we spent 10-12 hours each day "coaching" our babies on how to suck, swallow, and breath on their own. Once they accomplished this, they were ready to come home. (this is typical for preemie babies) Mark and I showed up everyday with our whistles and referee outfits on. We wanted our babies home as soon as possible.
While in the NICU, all babies are hooked up to every monitor possible. It is because of the monitors that her first heart episode was noticed. At about 2 weeks old, alarms went off and doctors immediately ran over to our little girl. Madison had gone into SVT (Supraventricular Tachycardia). This was caused by abnormal Cardiac Arrhythmias and resulted in a diagnosis of WPW (Wolfe-Parkinson White Syndrome). Over the next several weeks, Madison managed to have 3 episodes of SVT while in the NICU. Each episode would last about 15-20 minutes and her little heart would beat at 230-250 beats per minute. (average newborn heart beats at 100-160 beats per minute.) I now look back and think.. if Madison was a full term baby, would her abnormal arrhythmias have been noticed? I don't think think so, simply because she wouldn't have been monitored so closely. I then find myself thankful (??) for our NICU experience.
Madison now takes medication (Atenolol) to control her arrhythmias. She is also monitored periodically via a heart monitor and we listen to her heart daily with a stethoscope. To our knowledge, she hasn't had any SVT episodes. It is difficult to notice when an infant experiences SVT as they don't normally show outward symptoms.
Because of Madison's WPW diagnosis, her cardiologist (Dr. Gray) ordered additional tests (EKG, Echo (heart ultrasound), CT scan, and an MRI) to rule out any other diagnoses. It was during these tests that he discovered that her heart muscle was too thick. Madison was then diagnosed with Hypertrophic Cardiomyopathy in addition to Wolfe-Parkinson White Syndrome. Dr. Gray then referred us to Dr. Everitt.
We have now seen Dr. Everitt for about a year. Our appointments with her include routine Echo's, EKG's, heart monitors, blood work, and simply monitoring Madison's condition. Things were going well until October 8, 2009.
Friday, November 13, 2009
Mark and I have decided to blog Madison's journey of her heart transplant. You are welcome to join us; in fact, please join us! Although there are many families who have gone through this before, I feel like we are treading in an uncharted territory.
Madison has been on the list for about 3 weeks and already we have received so much love and support from everyone. Thank you!
My goal is to update her blog over the weekend and then continue from there.